Today, August 8th, is Severe ME day. Today is a day of remembrance, when we think of those whom we have lost to ME. Severe ME Day is August 8th because that was Sophia Mirza‘s birthday. Her death in 2003 was one of the first in which cause of death was listed as myalgic encephalomyelitis.
For the 25% of ME patients whose presentation is severe — which translates to hundreds of thousands of individuals around the world — every day is Severe ME day. Every day demands that the severe patient limit his or her exposure to the outside world, locking out light and noise. Something as everyday as the sight of a checkered shirt can overwhelm the senses, and it’s a challenge, or even impossible, to read this sentence. But despite their physical isolation, it is vital and morally imperative that these patients know we stand with them, to help them in whatever way we possibly can.
In memory of your friends, and keeping those who live with severe ME every day in your thoughts, consider taking part in one or more of the following actions:
1) Tweet using the hashtag #SevereMEDay
2) Post to Facebook or create a blog post about Severe ME Day.
3) Change your Twitter handle to It’sME(Your Name) to show solidarity and raise awareness
4) Use social media directed to your governmental representatives. Show them what Severe ME looks like.
— It’sME(Jaime) (@exceedhergrasp1) August 8, 2016
5) Donate to the CII’s ME/CFS Monster Study
From Microbe Discovery’s page:
“This will be the first ME/CFS study to look at the microbiome over time. They are collecting stool and saliva at four different times over the course of a year, allowing the researchers to see if the changes in microbiome and immune system are related to changes in symptoms over time. Blood is also collected at the first and last time points.
“All ME/CFS cases have been carefully diagnosed and meet both Fukuda criteria and the stricter Canadian criteria. The study will have 125 ME/CFS patients and 125 healthy matched controls.
“While there was enough funding for sample collection, the study itself requires $5 million to analyze the samples.”
6) Donate to 25megroup.org
25megroup.org is devoted to patients with Severe ME. You can donate or purchase items.
Also consider sharing their Appeal for Appropriate Care with your followers on social media!
7) Donate to the Open Medicine Foundation
The Open Medicine foundation ran their Severely Ill Big Data Study with Ron Davis. Now they are repeating their work to ensure that the data for the severely ill is consistent in minor to moderate patients. Donate to the End ME/CFS Project by clicking on the link below.
8) Reach out if someone you know has severe ME
People with severe ME may find conversations and visits exhausting, but that does not diminish the need for social contact we all require in order to feel fully human. Talk to friends and family of the ill person for guidance on the least intrusive way to engage in social contact. Is reading all right, but in-person visits are too much? Consider sending them a quick, friendly email to say you’re thinking of them. The computer screen is too bright or intense? Consider writing a short note by hand. Do your best to let your friend know that they have your support.
Severe ME is a day of remembrance, and it can be a day of action, pressing forward to raise awareness and help fund research to find effective treatments and someday, a cure. Money isn’t everything: you can fight through social media to raise awareness, and let friends and family know about Severe ME Day.
Recently, #MEAction has met with the Assistant Secretary for Health and Human Services, Karen DeSalvo, launched and analyzed a 1,800 stakeholder poll to send to the NIH, helped organize the #MillionsMissing campaign and protests, and we work hard to bring you community and science news. If you value grassroots organization fighting for change and fresh information each week, please consider donating using the button below this article.
If you are suffering from Severe ME and having a good enough day to read this article, know we are with you.
What are your ideas for the actions we can take today?